The most important thing to understand about death is its inevitability. There are no exceptions; for everyone death is inevitable.

My husband, John, died on April 3, 2025. While death came gently, it was not the death he had wanted, and for which he had planned. By sharing what happened to him, others may be better prepared.

When his cancer metastasized to the liver and was not curable, John was advised to get his affairs in order. John began to plan for his last journey, the journey to the other side of life, with the thoroughness he had used to plan a trip to Europe. Legal documents were completed, appointing Powers of Attorney, and outlining John’s wishes.

The deathwatch was unthinkably difficult for all the family; it was particularly horrendous for John. One of John’s requests was to die using the support of medical assistance in dying (MAID), and he applied.

Very suddenly, John began to show signs of confusion; we attributed this to a new chemo, or to the flu, or to dehydration. With medical support, we addressed each of these, but the confusion increased.

The process of assessing John for MAID was initiated: It was clear that John could not demonstrate capacity to make such a request.

The interview ended, and I knew that it was hopeless.

On hearing that he did not meet the competency requirements, John was distressed. He asked me how he could study for the questions. He asked me if he could make a speech. He said, “How hard can this be. I want to die, I want to die today, I want to die right now. How hard can this be?”

What we know now, but did not know then, is that as cancer breaks down the liver, ammonia is released to the brain, and confusion sets in. We were helpless as the confusion increased. There was a time when John did not know me. After that, each time I sat with him, I said, “Hi John, it’s Sheila, I’m your wife.”

John got lost in the kitchen, in a house where we have lived for fifty years. Every day, we combated the confusion to help him feel safe by describing what was happening and by saying our names. John died diapered, had a catheter, and was unable to swallow or speak. He was trapped in a body that no longer supported him. He was not able to live, and he was forced to wait for death to come.

At every corner, we were met with compassion. But the law is set.

If John had been able to write an advance request (AR) for MAID, he would have done so. He could have specified the points at which MAID could have been administered when he lost competency. He could have specified: When I no longer recognize my family. When I am trapped by my body, unable to move. When I can no longer toilet myself. When I cannot speak, or swallow. When the pain becomes difficult to manage.

If advance requests were legal, MAID could have been administered. John would have had autonomy over his dying, and he would have had dignity in his death.

84 per cent of Canadians want this right.

An advance request for MAID is not to be confused with an Advance Directive. Advance Directives allow a patient to choose or refuse health care treatment. In Canada, a Substitute Decision-Maker can be appointed in the event of capacity loss. Advance requests are a request for only an assisted death. Advance requests are not legal across Canada.* This will change. The Baby Boomers are dying, and pressure will be placed on the government to modify the law.

There is no gain in prolonged suffering; there is some suffering that only death can end.

*Note from Dying With Dignity Canada: The Province of Quebec has become the first jurisdiction in Canada to allow advance requests for those diagnosed with a serious and incurable illness leading to incapacity (e.g., Alzheimer’s), effective October 30, 2024. This means there is a discrepancy between Quebec and federal MAID laws, and the options that people in Quebec have at the end of life vs the rest of Canada.